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My daughter’s journey with chronic pain

Frugie Blog My daughter's journey with chronic pain

This has probably been the hardest blog post to write in a long time. It’s been our lives the last 12 months. I wanted to do it justice. I wanted to make it clear and hope others gain perspective and find answers too if they’re in the same struggle.

I didn’t expect to become a parent of a child with chronic pain. Of Emma’s 14 years, she has had maybe 3 times in her life the need for antibiotics, never had a broken bone or stitches (knock on wood) and until this year, hadn’t been in an ER.

Emma’s problems started a year ago with a hemorrhagic cyst on her ovary the size of a lemon, then that cyst rupturing and causing her tremendous pain that just would not go away. The last 12 months have been surgery, hormones, therapy, narcotics, acupuncture, different hormones, analgesics, and whatever else we could think of, as part of our laundry list of getting her to be pain free.

Unfortunately, some of these temporary aides like narcotics, can make the body even more susceptible to pain, or decrease its ability to resist it.

The whole ‘high pain tolerance’ theory becomes confusing when you’re dealing with someone who is in constant pain. You can say that someone has a high tolerance for pain because they don’t have Novocaine during a filling at the dentist. Or maybe they had a kidney infection for days and didn’t feel it. Maybe you get through your work day with a migraine. Everyone’s pain is different and it’s subjective. There’s no way of knowing whose pain is greater than someone else’s.

But when your body is sending pain signals to your brain on a daily basis 24/7; you can become fearful of the pain, where your anxiety and anticipation add to the pain.

So someone who is used to being in pain, might react differently to new pain than someone who goes about their life pain free with only pain on occasion.

After Emma’s surgery in June, we thought we were in the clear and she would start feeling better. But by September she was in as much pain as she was during the cyst rupturing. She would go to school but text me how miserable she was. She would come home and pop a bunch of ibuprofen and sit on the couch with a heat pad for hours. The cycle would repeat and it would take her all she could just to go to school.

There was no time and energy left for socializing or extra curricular activities. Her daily struggle was a pain level of about a 6 (on a scale between a 1 and a 10, 10 being the worst).

Our girl was miserable and she begged for answers and writhed in pain. Some days it would leave me just a shell of a mom trying to comfort her child.

I went to our specialists at Children’s Hospital in Seattle. I wanted some kind of answer. I wanted a different pain pill, or treatment.

We figured since hormones are the bulk of her female issues; the surgery diagnosed her with endometriosis- we decided on an IUD.

Some people might think this is drastic to give a 14 year old an IUD. But it was with careful consideration. And because I have my own endometriosis issues, my IUD I got 2 years ago saved my life from debilitating pain. I thought this might be the answer for Emma. She needed to quiet down her reproductive system. Ovulation and menstruation needed to cease for now. They were only causing her pain and misery. We needed help.

The IUD seemed to be an answer on paper, but we learned over the months that her body just didn’t want it. She ended up with new pain from having it in place and took more ibuprofen to get over it.

The ibuprofen got out of hand when around Christmas we went to the ER with horrible pain she was experiencing. I didn’t know if her ovary had twisted, if she had an ulcer or hernia or just an alien trying to come out! She was writhing in pain and after tests they couldn’t find anything ‘wrong’ with her. General surgeons did a consult in the ER and determined she probably had gastritis from heavy doses of Advil. We changed our approach and focused on different pain management.

Visiting a gastroenterologist was our next step. The plan was for her to have an endoscopy to rule out any GI issues. Well, we found something. But sadly, it’s not a ‘fixable’ something. More of a ‘this is how you’re programmed. Sorry’ something.

She has a nervous system disorder that is common among many folks. Her stomach doesn’t empty the acid all the way like it’s supposed to. Acid pools above the stomach causing pain. A sort of reflux situation, that not even your average acid blockers could really do much for. It’s not a stomach issue, it’s a nervous system issue.

The specialist said to me that although this condition is common, it’s the hardest to treat. Because really, there is no treatment. It’s just the way she is.

We tried acupuncture. Three times. Ugh. I love acupuncture and have been going regularly for 5 years. Emma. Not so much. She hated it. When she was in pain, the needles would make her pain worse. She hates needles. She didn’t like lying on the table feeling helpless. She freaked out.

We went to psychologists and pain specialists. She hated them too. They kept talking about her anxiety. She didn’t understand why she needed to go to a head doctor for actual physical pain that she felt in her gut. It made no sense and she resented those appointments. Which probably stalled any progress anyway, right?

When your child is ill or hurting, you get so much advice. Some solicited, some unsolicited. We were suggested to try faith healing, gluten free diets, dairy free diets, rigorous exercise, more tests, getting a second opinion. Yes, all meant with good intentions, but not all realistic or actually helpful.

You know how hard it is to get a second opinion when you had to move mountains for the first opinion? It’s easier said than done.

By this time, we had the IUD removed and she was feeling a lot better. At least we knew one pain was handled. But then our full circle moment came to realization when that was supposed to be one of the ‘solutions’ and now we’re just back to square one.

Time had helped and healed some of her abdominal pain that was residual from the surgery in June.

After 3 specialist departments and hours and hours of appointments, we now knew that basically Emma’s nerves were still reacting to the pain of the cyst rupturing, even though there was no reason for this pain. This happens in appendicitis patients who have a ruptured appendix. They can feel pain in that area for up to a year later.

Amputees feel pain where there isn’t even a limb. Our nerves are amazing, magical, wonderful, devilish, mechanisms of our body sometimes.

Emma was determined to figure out a way to tell her body to stop thinking it was in pain.

And then the universe, God, and all divinity intervened to bring us one more option that I had never even heard of.

Recently, I spoke at a business women’s lunch on how to start a blog for your business. It was the local chapter for Business Among Moms.

I met with a woman who was hoping to learn how a blog could help promote her practice to more clients. We talked about her techniques she practices and what she’s trained in and I told her about Emma’s chronicles. Kalleen who is a licensed EFT therapist, EFT stands for Emotional Freedom Techniques or commonly called Tapping, had helped many people overcome a variety of issues and I mentioned Emma’s situation. She reached out to me and offered a session for Emma.

Sessions can be done at your home. Emma was open to the idea. I told her that it was a method that used meridians in your body, like acupuncture does, but without the needles. This pleased her greatly!

The therapist shows you how to tap on yourself and walks you through the series of taps. What is key to the session is not only the tapping itself, but the phrases and statements you say out loud WHILE you are tapping.

Pain is real. It’s not in your head. It’s not ‘perceived’. It’s honest to gosh real and hurts. No one can argue someone else’s pain. Nobody ever doubted Emma’s pain or that she was ‘faking’ it. There was never the ‘it’s just in your head’ explanation. But pain is held on in the body psychologically not just physically.

Pain manifests carrying three elements- fear, anger and benefits.

Depending how your body came upon the pain, depends upon these elements.

For Emma her fear was that she might have had cancer or something serious with her ovary or reproductive organs. After the cyst ruptured and her pain wouldn’t go away, she thought it was something life threatening or rendering her infertile.

Her anger came when she felt like she should be better after her surgery, but she wasn’t. When her pain interfered with her social activities, school, and quality of life, it made her angry.

The benefits are hard to understand. Benefits despite not being logical, can still be something we hold on to- like a crutch or a cast to protect us. In Emma’s case, she got used to being excused from physical activity, making excuses not to see friends, having an ‘out’ when it came to not having school work done. She didn’t like these benefits, but she started relying on them.

During Kalleen’s time with Emma, the tapping she showed her to do, while she said key phrases usually starting with “Even though…” and ending with “and that’s enough” or “that’s okay” pulled off a scab that Emma didn’t realize she had been building up.

Once she released some of the mental cages that had locked around her pain, she realized some of the control she had over it.

In an hour setting her pain went from a 2 on a pain scale (out of 1-10 and 2 has been her lowest in a long time!) to a 1 on the pain scale! She could tell she felt better in just an hour.

And to be honest, she broke down in tears because of it. She actually cried a lot during the session. It seems to open a flood gate of emotions. Again, because pain has fear, anger and benefits attached to it, she didn’t realize the emotional hold her pain had on her.

If you go to Kalleen’s website you can see a demonstration and explanation of what Tapping is.

I have even used Tapping on myself. The other day I had a migraine, or the start of one. I did a quick application of it

Tapping on the heel of my hand with the fingertips of my other hand saying “even though….”

Tapping on the top of the center of my head “I feel a migraine coming…”

Tapping gently with my fingertips the tops of my eyebrows “I can relax and know…”

Tapping gently along my cheek bones “that it will go away…”

Tapping gently under my nose “after some time…”

Tapping gently on my chin “I will feel better…”

Tapping on top of my pecs “I won’t get a migraine”

Tapping with one hand under my armpit along my rib cage “I feel better.”

You can come up with what you say, or not say anything at all and just gently tap in the places I mention in the order listed. Gently and for 5-7  times each.

It’s remarkable the difference you feel.

I can gladly account that Emma is feeling better and her pain is at an all time low! We are going to do another session with Kalleen, and Emma even said she wants to try acupuncture again.

Things are better today than a year ago and Emma was cast in the school play and is looking forward to feeling ‘normal’ again. Whatever that is for a teenager!

Kalleen generously offered her session with us free of charge in order for me to write this post. But I can honestly and truly say with whole heart that I will happily pay for this in the future as needed.

Finding new ways (even if they are centuries old methods!) of helping deal with pain, stress and struggles in our lives, is always worth it.

Kalleen would be more than willing to answer your questions. You can leave them in the comments or find her on her website- http://neuroeft.com/

Whenever trials and tribulations come our way, you have to ask what the purpose is. And my wish for Emma is not only she will be pain free very soon, but that she will take this journey and always remember the bad ass she is for persevering through this personal hell she was in. I hope in 10 years, she will know better and be stronger for whatever comes her way.